News

NICHQ to Lead National Sickle Cell Disease Collaborative

Sept. 27, 2018

BOSTON The Health Resources and Service Administration has selected NICHQ as the National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program. In this role, NICHQ will leverage its experience with chronic disease management and data-driven quality improvement methodology to support and coordinate the activities of five regional coordinating centers (RCCs) seeking to improve sickle cell disease care. More specifically, NICHQ will provide RCCs with the resources and technical assistance needed to rigorously collect, monitor and report on their data, share their findings and best practices, and deepen lessons learned.

“Having served as the previous National Coordinating Center, we see this as an opportunity to build upon the successes, experience and partnerships we’ve developed,” says NICHQ President and CEO Scott. D. Berns, MD, MPH, FAAP. “The significant success of the last iteration—including a nearly 30 percent increase in those receiving care—illustrates what these partnerships can achieve and signifies the potential to improve health outcomes for thousands of Americans.”

Interested in learning more about the successes of the 2014-2017 Sickle Cell Disease Treatment Demonstration Program? Read the full case study here.

The more than 1,000 babies born with sickle cell disease each year face substantial health challenges including severe pain episodes, acute chest syndrome and stroke. Although outcomes have improved, too many children with homozygous sickle cell disease (HbSS) die before they reach 18. Those who do reach adulthood have difficulty accessing quality care because too few providers are trained to treat sickle cell disease into adulthood. This national collaborative seeks to change these outcomes by improving coordination and service delivery for individuals living with sickle cell disease, enhancing access to services, and improving and expanding patient and provider education.

“By seamlessly continuing the work of this contract, and work we’ve supported since 2011, we can accelerate future improvement,” says NICHQ Project Director Karthi Streb, who’s overseen the Sickle Cell Disease Treatment Demonstration Program’s efforts for the past year. “Together with the RCC grantees, we’ve put a robust data infrastructure in place. Now, we’ll work from that foundation to track improvements, detect trends, and identify and qualify needs, all while continuing to leverage NICHQ’s Collaboratory, a state-of-the-art, virtual collaboration and data visualization tool.”

Interested in additional sickle cell disease resources and findings? The Compendium of Tools and Materials highlights promising strategies for improving sickle cell disease care. You can also view the full 2017 Congressional Report, detailing the activities, outcomes, and lessons learned stemming from this work, or the latest Model Protocol, which offers recommendations and strategies to improve care.

For media inquiries, please contact:
Caitlin Forbes
Caitlin Forbes
NICHQ Communications Manager
cforbes@nichq.org or 617-391-2727